Allergic Living’sGwen Smith interviews Jo Frost about her multiple allergies, and why she partnered in 2013 with Mylan Specialty, the marketer of the EpiPen, to heighten awareness of anaphylaxis. While speaking to the former “Supernanny”, we also got some of her insights on parties and sleepovers with allergic children.

Allergic Living: Jo, when I interviewed[1] you for Allergic Living magazine back in the Summer of 2012, it was the first time you’d spoken out about your food allergies. Now, you’ve become a full-fledged allergy advocate. What is it that drives you in this direction and who is it you most want to inform?

Jo Frost: Well I think big, so for me it’s not ‘who’ but rather countries. I believe that in this country (the USA), both those who have life-threatening allergies and especially those who don’t have life-threatening allergies need to be educated and more aware. From the last time we spoke, it’s become very apparent to me that there was a lack of education and understanding about life-threatening allergies and the difference between the serious medical condition and allergies that perhaps are seasonal.

AL: Are you saying that people get confused between the sniffles and the risk of a big anaphylactic reaction?

JF: Absolutely. There’s confusion – and there’s also a huge lack of awareness and understanding. So when I had the chance to come together with Mylan Specialty and to recognize the 25th anniversary of the EpiPen, I was just, ‘wow, I’m on board, I’m on board’. To be able reach out to millions of people across America and really educate and bring awareness of the importance of potential life-threatening and severe allergies, that was of utmost importance to me.

AL: You are out there talking about anaphylaxis across the country. Have you heard things in the course of this that have surprised you?

JF: I would say some of the myths you hear surrounding life-threatening allergies. These are real medical conditions, and we need to educate to get Americans to understand that the real, life-threatening allergies have a serious impact. We have read in the media of situations that have been horrendous for some families with food-allergic children. So it’s important for people to understand: this is real.

Another myth is that people who have a food allergy have to be isolated or live in a bubble. That’s so not the case. As an allergic adult, I have traveled to 47 states in America, in and out of families’ homes, I’ve looked after children with allergies. For me that’s just a myth that needs to be dispelled.

People will also still say, ‘just a little bit will probably be OK’. Well, it’s not OK to ever try a small piece of anything that’s your life-threatening allergen. To me, it’s about what we can do about the awareness and the education. I’m working on this campaign on this 25th anniversary to share my story about living with this potential life-threatening condition that many of us deal with every day.

We have to further improve preparedness for anaphylaxis, and that’s something that’s certainly important to me and needs to be important to everybody who has or cares for somebody with life-threatening allergies.

I have an emergency action plan, and my first goal in it is to always know my signs and symptoms and to always avoid my allergens. I’m very, very vigilant about making sure that I’m empowered every day. It doesn’t restrict me in anything that I do, but I have to make sure that I’m prepared.

AL: You mentioned travel. What about socializing as an allergic adult?

JF: Just recently met some new neighbors [in California], and they kindly invited me to a dinner party. I picked up the phone a week in advance and spoke to the hostess. I explained that I have a life-threatening allergy, what’s known as anaphylaxis, and here’s what I’m allergic to.

I said: ‘I’d like you to look at your menu, if you don’t mind, because there may be some things I’m allergic to. But if you’ve already set that menu, I totally understand, and I’d be more than happy to come by later in the evening when everything is done and cleared up’.

And my neighbor said, ‘No, no, no, I’m so glad you called, and we can change the menu’. So she changed it and I went and had a happy dinner party – and met all my neighbors! It’s nice to be able to do that.

Of course it should go without saying, but always carry two EpiPens. They go wherever I go.

Next: Birthday Parties, Sleepovers with Allergies

AL: Jo, we know you best as an expert with children. Every child wants to be invited to a birthday party or play date. What advice do you have for parents of children with food allergies who want their kids to enjoy the ‘normal’ childhood experiences? It’s not always easy when you have to be vigilant about food exposures.

JF: It’s also about preparing. You have to make sure that the person who is holding that birthday party actually has that information. And you have to help them to understand what they can do, so that they know what they can do to make sure your child is safe and protected in that circumstance.

The more you’re able to do that, the more the conversation is had and everybody else is aware. The host when it comes to food the children will have or to snacks is aware.

Articulating that will create a safe environment for children so they will be able to socialize and enjoy the event that they’re at. [For multiple allergies or allergens that are difficult to avoid, Allergic Living additionally recommends bringing your child’s own safe foods.]

It’s not something to be embarrassed about. Some children just have a medical condition. We have to be transparent, we have to voice what the medical condition is, so that we can really facilitate creating a fun, social environment for our children, so they can enjoy childhood without feeling restricted.

It’s about a mindset, about an attitude. When you become somebody who feels restricted [by the condition], then it becomes magnified. It’s about breaking through that restriction, and realizing that the more you can articulate and educate, and be prepared with your action plan, then you allow your child to have that childhood.

This is something I can testify to as a 43-year-old woman who had a very fulfilled childhood.

AL: What about other parents who shy away from inviting allergic kids over because they’re almost paralyzed with fear about the condition. What can be done?

JF: It’s again education. Give them the facts about anaphylaxis. It still goes back to the action plan: if you know the signs and symptoms, and you avoid allergens at all costs, and the child carries their EpiPens. (And if you did need to use them, you’d use them and call 911 afterwards.)

When you can give a parent an action plan and they can articulate that to the people who surround them and their family, then you calm all of those nerves and anxiety – because now they feel in control of the situation. It’s about being very open and recognizing that you are going to do all that you can to make sure your child can socialize and have fun in a safe environment.

AL: Sleepovers are another hot topic for socializing by the tween years. What advice do you have for a sleepover when a child’s got food allergies?

JF: As children get older, you have to work with them as they are maturing so they can make good decisions. [Again, Jo advises making sure the family is fully up to speed with the allergies and how to implement an action plan.]

With teenagers and tweens, I’ll sometimes do role play and certain scenarios to help them feel confident in how they’ll respond. Certain teenagers when put on the spot feel peer pressure or feel embarrassed if they don’t want to articulate that they have life-threatening allergies. So when a circumstance occurs, if they’ve already simulated it in role playing, they’re able to address it with confidence. I’ve even done this with adults in restaurants.

AL: How do you role play with an adult?

JF: Some adults feel a bit reserved to voice that they have these allergies, and they may have a server who wants to whisk through the menu.

I really teach them to ‘own’ the life-threatening allergy that they have. It is what you have, and you are going to be looking to your mindset every day to live life to the fullest but prepared. With your action plan in your back pocket, and your epinephrine.

It’s about recognizing the awareness we can give this country – from adults to parents to children to teens – and making sure we have an action plan.